Acceptance, Autism and Independence

I have never seen Rain Man all the way through. The reason has nothing to do with the portrayal of autism spectrum disorders or savants or other labels attached to Dustin Hoffman’s character. When it came out, I had no interest in seeing it because the notion of one character redeeming himself while using another character just isn’t something that major Hollywood productions do well these days.Yet, for many people of a certain age, Rain Man was an important moment in becoming aware of autism.

Before my son was diagnosed, I was dimly aware of what autism was. I can’t recall anyone telling me about a friend or relative of theirs on the spectrum. What I knew was filtered through mass media reporting.

After the twins were born, we were looking into adopting another child. We attended workshops and in one class there was a questionnaire in which we had to mark how comfortable we were with children with special needs. There was a long list of diseases, disorders and life experiences. I recall having no reservations about accepting a child living with HIV/AIDS but feeling a lot less certain I could parent an autistic child. Having worked for AIDS service organizations, I was much better informed about HIV/AIDS than I was about autism. Also, this workshop was happening at the same time I was trying to convince my wife that I was pretty sure our son was on the spectrum.

Of course, I didn’t use “on the spectrum” at that time because I didn’t know the jargon.

All those years ago, I had no idea how many appointments would be required to get a diagnosis, how many people would be involved in Daniel’s therapies and how much work would be involved.

When I was a kid I would often ask my dad why he joined the army. His answer, “there was a job to do and someone had to do it,” has had a profound impact on how I live my life. It informs the choices I make.

Parents of autistic children must make a lot of choices about their kids and not just ones about therapies or schools or integration.

Becoming aware of what autism is or is not is a choice. Accepting that my son’s progress will look different from either of my daughters is a choice. Accepting that I have a large role to play in how he acquires skills is also a choice.

What I want for my son is what I want for all of my children: a life of ever-increasing independence. I do not want that because he is autistic: I want that because he is an individual.

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I accept that his path will be different because the path is different for all of us.

The path is his to chart and my job is to guide and step back.

Posted by gingerheaddad with WordPress for BlackBerry. I kinda like posting with my Blackberry.

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